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Tarlov Cyst on the spine: Any advice?
Spine Health | Last Active: Oct 21 8:17am | Replies (173)Comment receiving replies
Hi, I was diagnosed with a Tarlov cyst at S2 one year ago, and again last month. I received an epidural steroid last year, but no other treatment. Now, symptoms are becoming increasingly worse, including, bowel and bladder issues, neuropathy, migraines. I am studying everything I can, educating docs as I go (so far: GP, GastroEnterologist and Orthopedic Spine surgeon). I am currently searching for a neurosurgeon who has treated these cysts. The Tarlov Cyst Fdn lists 3 docs, in Dallas, Sacramento and Silver Spring, MD. I am in the process of setting up a video call with a surgeon at Metropolitan Neurosurgery in MD (altho the doctor listed on the Foundation's website does NOT take Medicare, so I can't see him). I stumbled on Penn Medicine in PA that lists Tarlov Cyst as one of the conditions they treat, and that seems like a small victory! Are there any other places to look online for a "complete list" of experienced neurosurgeons? I really appreciate a community of folks with whom to share experiences and information. Thank you!
Replies to "Hi, I was diagnosed with a Tarlov cyst at S2 one year ago, and again last..."
Did you try Dr. Frank Feigenbaum in Dallas, TX? I'm going to see him on August 4th, and then hopefully have surgery to get rid of all my Cysts on my Sacral Joint!!! I have Medicare and a Medicare part C insurance, and it seems like that worked out okay!! Dr. Feigenbaum is a Neurosurgeon who specializes in Tarlov Cysts! I haven't found any other doctor in the United States who does just that!! Good luck to you, I know how painful these Tarlov Cysts can be!!
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Hi peacenlove... I had an MRI done end of September 2020 after 8 months of tailbone pain (resulting from a fall in Nov 2019 which resulted in a broken tibia, the tailbone stuff didn’t manifest itself till a few months later). All PT people would say was that it was inflammation. Anyway, the MRI revealed 3 Tarlov cysts in S2 area. Now I am in constant pain and the life I knew is gone. I live in PA (near Harrisburg), and saw you mentioned Penn Medicine ... I did make a trip to Johns-Hopkins spine neurosurgery center about a month ago. There was only one surgeon who would even talk to me about it [and they don’t even list Tarlov cysts in their services]. And, because it was a fall (trauma) that started it all, he had me get a CT scan of sacrum and coccyx to rule out any fracture. There was none. Still, he wants me to try getting a steroid injection in the coccyx area first, and see if that helps. If it does help, great. If it doesn’t, then J-H can go to step 2 (the cyst drain/fluid injection) ... petrified of that! An interventional radiologist does that procedure. I will turn 66 in a few months, and the retirement dream my husband and I had seems to be fading .. the places we wanted to visit, the things we wanted to do. It’s like getting through the day is all I can do now.
Can you share with me the name of the surgeon you found that is actually in PA (and if their is any level of experience that is made known)?
I hope your video conference with Metropolitan Surgery goes well ... what a boat we are in huh? So incredibly sad that science does not research methods of better surgery for these damn things!